The Gassman Family

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Lilly, when were you diagnosed with 22q? - I was born with 22q (She is now 19 years old).

How has 22q changed your family for the better? - 22q has made my family better because we have become more aware that there are other children with disabilities and that I am not alone!  22q has allowed our family to show support and encouragement to other patients with disabilities and not be afraid to help them.

What has been your biggest challenge with 22q? - My greatest challenge is my speech impediment.  I have trouble pronouncing words with R and L in them.  Those words are a real chore for me.  I find this speech impediment ironic because my name has 3 L's within it (my full name is Lillian).  Also, a challenge is keeping friends.  I do not understand social cues that another peer does.  It can take me sometimes ten minutes before I understand a joke or I may not get at all and start asking questions.  Sarcasm is worse because I always think someone is being serious.  I can befriend adults faster than I can my own age group.

What is your greatest accomplishment? - I have many accomplishments that fall together.  I started working for Kroger in the fall of 2013 as a bagger, and in late 2014, I was promoted to cashier.  Now, before my third anniversary with Kroger, I obtained a promotion to train as a pharmacy tech!  My journey into the medical field began in my junior year of high school when I was accepted into my career to become a medical assistant.  I unfortunately didn't pass my test to become a medical assistant by 3 points.  However, I still graduated from both the career center and high school.  During my time in high school, I spent summer as a camp counselor for a disability camp known as Recreation Unlimited.  In my own words, Recreation Unlimited is an amazing camp that allows disabled children and adults to climb a 50 foot tower, swim every day, attend a dance, and play on a playground.  After high school, I was accepted into the Central Ohio Technical College.  I wanted to become a radiology tech, but unfortunately wasn't accepted into the program.  Kroger has helped me choose the path to become a pharmacy tech though.  I switched programs to learn how to become a better tech while working in the pharmacy.

What one thing do you need most from the 22q community and/or our foundation? - What I need from the 22q community/foundation is a place I can go once I turn 22 years old.  I am 19 years old and my pediatrician has a rule where she stops seeing patients once he or she turns 22.  I know most childhood doctors allow patients with a disability to continue to stay with them for most of their lives, however mine does not.  I live in Ohio and most of the doctors I know do not know about 22q11.2 Deletion Syndrome.

What one thing do you most enjoy about being part of the 22q community - When I was a baby, my mom did not have the 22q community and support that new parents are receiving now.  At the time I was born, she was told that only 300 people were diagnosed with 22q throughout the United States.  She is excited to learn more about conferences and Facebook groups because now she knows she and I aren't alone.  She is also excited that she can help new parents and she can receive more help even though I am an adult.


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